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The Science and Ethics of Genetically Engineered Human Dna THE SCIENCE AND ETHICS OF GENETICALLY ENGINEERED HUMAN DNA HEARING BEFORE THE SUBCOMMITTEE ON RESEARCH & TECHNOLOGY COMMITTEE ON SCIENCE, SPACE, AND TECHNOLOGY HOUSE OF REPRESENTATIVES ONE HUNDRED FOURTEENTH CONGRESS FIRST SESSION JUNE 16, 2015 Serial No. 114–24 Printed for the use of the Committee on Science, Space, and Technology ( Available via the World Wide Web: http://science.house.gov U.S. GOVERNMENT PUBLISHING OFFICE 97–564PDF WASHINGTON : 2016 For sale by the Superintendent of Documents, U.S. Government Publishing Office Internet: bookstore.gpo.gov Phone: toll free (866) 512–1800; DC area (202) 512–1800 Fax: (202) 512–2104 Mail: Stop IDCC, Washington, DC 20402–0001 COMMITTEE ON SCIENCE, SPACE, AND TECHNOLOGY HON. LAMAR S. SMITH, Texas, Chair FRANK D. LUCAS, Oklahoma EDDIE BERNICE JOHNSON, Texas F. JAMES SENSENBRENNER, JR., ZOE LOFGREN, California Wisconsin DANIEL LIPINSKI, Illinois DANA ROHRABACHER, California DONNA F. EDWARDS, Maryland RANDY NEUGEBAUER, Texas SUZANNE BONAMICI, Oregon MICHAEL T. MCCAUL, Texas ERIC SWALWELL, California MO BROOKS, Alabama ALAN GRAYSON, Florida RANDY HULTGREN, Illinois AMI BERA, California BILL POSEY, Florida ELIZABETH H. ESTY, Connecticut THOMAS MASSIE, Kentucky MARC A. VEASEY, TEXAS JIM BRIDENSTINE, Oklahoma KATHERINE M. CLARK, Massachusetts RANDY K. WEBER, Texas DON S. BEYER, JR., Virginia BILL JOHNSON, Ohio ED PERLMUTTER, Colorado JOHN R. MOOLENAAR, Michigan PAUL TONKO, New York STEVE KNIGHT, California MARK TAKANO, California BRIAN BABIN, Texas BILL FOSTER, Illinois BRUCE WESTERMAN, Arkansas BARBARA COMSTOCK, Virginia DAN NEWHOUSE, Washington GARY PALMER, Alabama BARRY LOUDERMILK, Georgia RALPH LEE ABRAHAM, Louisiana SUBCOMMITTEE ON RESEARCH AND TECHNOLOGY HON. BARBARA COMSTOCK, Virginia, Chair FRANK D. LUCAS, Oklahoma DANIEL LIPINSKI, Illinois MICHAEL T. MCCAUL, Texas ELIZABETH H. ESTY, Connecticut RANDY HULTGREN, Illinois KATHERINE M. CLARK, Massachusetts JOHN R. MOOLENAAR, Michigan PAUL TONKO, New York BRUCE WESTERMAN, Arkansas SUZANNE BONAMICI, Oregon DAN NEWHOUSE, Washington ERIC SWALWELL, California GARY PALMER, Alabama EDDIE BERNICE JOHNSON, Texas RALPH LEE ABRAHAM, Louisiana LAMAR S. SMITH, Texas (II) C O N T E N T S June 16, 2015 Page Witness List ............................................................................................................. 2 Hearing Charter ...................................................................................................... 3 Opening Statements Statement by Representative Barbara Comstock, Chairwoman, Subcommittee on Research, Committee on Science, Space, and Technology, U.S. House of Representatives ................................................................................................ 5 Written Statement ............................................................................................ 5 Statement by Representative Daniel Lipinski, Ranking Minority Member, Subcommittee on Research, Committee on Science, Space, and Technology, U.S. House of Representatives ............................................................................ 6 Written Statement ............................................................................................ 7 Statement by Representative Lamar S. Smith, Chairman, Committee on Science, Space, and Technology, U.S. House of Representatives ..................... 8 Written Statement ............................................................................................ 9 Witnesses: Dr. Victor J. Dzau, President, Institute of Medicine, the National Academy of Sciences Oral Statement ................................................................................................. 10 Written Statement ............................................................................................ 13 Dr. Jennifer Doudna, Professor of Biochemistry and Molecular Biology, Uni- versity of California, Oral Statement ................................................................................................. 18 Written Statement ............................................................................................ 20 Dr. Elizabeth McNally, Professor of Genetic Medicine, Professor in Medicine- Cardiology and Biochemistry and Molecular Genetics; Director, Center for Genetic Medicine, Northwestern University Oral Statement ................................................................................................. 23 Written Statement ............................................................................................ 25 Dr. Jeffrey Kahn, Professor of Bioethics and Public Policy; Deputy Director for Policy and Administration, Berman Institute of Bioethics, Johns Hop- kins University Oral Statement ................................................................................................. 32 Written Statement ............................................................................................ 34 Discussion ................................................................................................................. 40 Appendix I: Answers to Post-Hearing Questions Dr. Elizabeth McNally, Professor of Genetic Medicine, Professor in Medicine- Cardiology and Biochemistry and Molecular Genetics; Director, Center for Genetic Medicine, Northwestern University ...................................................... 64 Appendix II: Additional Material for the Record Statement by Representative Eddie Bernice Johnson, Ranking Member, Com- mittee on Science, Space, and Technology, U.S. House of Representatives .... 66 (III) THE SCIENCE AND ETHICS OF GENETICALLY ENGINEERED HUMAN DNA TUESDAY, JUNE 16, 2015 HOUSE OF REPRESENTATIVES, SUBCOMMITTEE ON RESEARCH AND TECHNOLOGY COMMITTEE ON SCIENCE, SPACE, AND TECHNOLOGY, Washington, D.C. The Subcommittee met, pursuant to call, at 2:16 p.m., in Room 2318 of the Rayburn House Office Building, Hon. Barbara Com- stock [Chairwoman of the Subcommittee] presiding. (1) 2 3 4 5 Chairwoman COMSTOCK. The Subcommittee on Research and Technology will come to order. Without objection, the Chair is au- thorized to declare recesses of the Subcommittee at any time. And without objection, the gentleman from California, Mr. Sher- man, is authorized to participate in today’s hearing. Good afternoon, and welcome to this hearing entitled ‘‘The Science and Ethics of Genetically Engineered Human DNA.’’ And I believe we also would like to welcome Representative Abraham to his first Science Committee hearing. Dr. Abraham, we are happy to have you join the Research and Technology Sub- committee and we look forward to having the benefit of your exper- tise. Now, in front of you are packets containing the written testi- monies, biographies, and truth-in-testimony disclosures for today’s witnesses. I now recognize myself for an opening statement. Biotechnology—the engineering of genetic material in living beings and plants—has transformed modern medicine and agri- culture. Rapid advances in biotech research have brought great op- portunities for new medical treatments and products, and simulta- neously have also raised questions about possible ethical implica- tions and safety issues. Today, we are here to discuss the science and ethics of the most recent and eye-opening development in biotechnology: human ge- nome-editing. This research has been a major topic of news and editorials in recent months. New tools that allow a gene to be de- leted, inserted, or replaced by a different piece of DNA are becom- ing more cost-effective and simpler to execute. In April it was reported that for the first time a team of Chinese scientists had attempted to edit the genome of human embryos. The report raised concerns for many scientists and policymakers about the safety and ethics of using these new technologies on human DNA. Many prominent scientists have called for a better framework to be developed for responsible use of the technology. I look forward to learning more from our witnesses today who will provide an overview of the science behind these new tech- nologies, help us examine the implications and risks, and explore what the next steps should be for building the right kind of frame- work for utilizing the technology. They will also help us answer how the United States can be a leader and provide scientific and ethical leadership in this arena. [The prepared statement of Chairwoman Comstock follows:] PREPARED STATEMENT OF SUBCOMMITTEE CHAIRWOMAN BARBARA COMSTOCK Biotechnology—the engineering of genetic material in living beings and plants— has transformed modern medicine and agriculture. Rapid advances in biotech research have brought great opportunities for new med- ical treatments and products, and simultaneously have also raised questions about possible ethical implications and safety issues. Today, we are here to discuss the science and ethics of the most recent and eye- opening development in biotechnology: human genome-editing. This research has been a major topic of news and editorials in recent months. New tools that allow a gene to be deleted, inserted, or replaced by a different piece of DNA are becoming more cost-effective and simpler to execute. 6 In April, it was reported that for the first time a team of Chinese scientists had attempted to edit the genome of human embryos. The report raised concerns for many scientists and policy makers about the safety and ethics of using these new technologies on human DNA. Many prominent scientists have called for a better framework to be developed for responsible use of the technology. I look
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